success

[Guest guest]

How can I get an indication of treatment success for autistic

childrens

Ami

[Guest guest]

In response to your query this list is full of testimonials as to success.

The overall trend among parents that are involved is they actually question what

the " experts " advise them of, just like you are. Yes they question at first

but with time they come to realize what has been obvious all along. Our kids are

just sick and need to have a wide range of illnesses addressed, Mainstream

Doctors just do not have the training to deal with Autism. A member of the

teaching staff at U of M Medical school stated it most correctly when she said,

" We don't teach Autism in Med School and the majority of the General Ped Docs

have no real experience with these kids because the disease used to be so rare.

Few have the hands on experience that Dr G dose.

What to expect. A long road that leads to true recovery. As your child gets

healthy he/she will overcome the developmental delays. I am watching my kid

literally wake-up. It is slow but very exciting and we start general Ed classes

this Fall, True academics, math, reading ETC ETC. Connor and I have a long way

to go but the very real goal is total recovery and we are well on our way. Very

Cool!!!!

> From: zagaedu <emilioc@...>

> Subject: success

>

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Thanks for your reply.  It is very encouraging!  I agree wholeheartedly about

the medical world; I never even bother asking our pediatrician questions about

anything autism because it's pointless.  My son's pediatrician, whom is a great

guy, I believe was the last to know about my son's diagnosis as he assured me he

was fine all the way along.  We have started with a DAN doctor a few years ago

and have seen some progress but I am truly wondering if there is something

more.  My son is not sickly.  He does not get sick very often at all and when he

does, he bounces right back within a day.  I'm more concerned with his immune

system in general and intestinal yeast.  He has a little pot belly and always

has.  He has food allergies and regular allergies and I just want to get him

back on track.

 

Was your son sick all the time?  How did you know you needed something more for

him in terms of ?

 

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Dear Bil

Thank you,we really hope dr G protocol can help.We are evaluating the issue and

any information can help to us.

I ask myself why i did not find dr G pubblications after 2003.In this period a

lot of research has been done (specially thanks to MRI and fMri) and i did not

find references to dr G in this period.May be my search was not complete.

Thanks in advance

Ami

success

>

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Dawn

In response to your question was my kid sick all the time the answer is both yes

and no. He was actually never sick in the traditional sense. Few colds one or

two ear infections always bounced back real fast. Never ran a temperature for

any of it. Healthy no, He had terrible bouts with digestive track problems,

probably had many viral and bacterial based illnesses that were never diagnosed

by his PED because he never show any of the outward signs of illness. His immune

system was not reacting/recognizing them. Two year ago on Christmas the entire

household came down with a terrible flu. Fever, sore throat, intestinal

nightmares. Tough stuff my wife and I were in bed for two weeks off and on.- my

son had none of the outward signs but his behavior went to hell and back. He had

it first, brought it home from school, I took him to his PED and she could find

nothing wrong. No temp, slightly " Raw " looking throat, He was sick, miserable

and as usual not

diagnosed.

This has been going on for years,

Now as his labs become normal and he is developing speech he will tell me he has

a headache or tooth ache and we can deal with it and not just the behavior that

we did not understand.

One of the most recent leaps forward was last month when I took him to his first

horseback riding lesson. It started with him brushing an animal whose back was

even with Connor's nose, within minutes his eyes had turn very red, nose watered

and his face started to swell. I got an antihistamine in him in a hurry and got

him in the pool and it all settled back down. Real scary.

The outcome was we started him om Claritin and a nasal inhibitor and suddenly we

made a quantum leap forward with language. We have been so concerned with food

allergies for so long we were ignoring environmental allergies. Another piece of

the puzzle dealt with. He is doing great and will be in his first general ed

classes in he fall.

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Dawn,

I am only 4 weeks into this protocol so I am eager to hear any thoughts and

encouragement that we are on the right track. Your son sounds a lot like my

little boy. Our guy is very healthy but does have severe food allergies and

regular allergies. Since we have rampant auto immune issues in our family

like RA and lupus, food allergies, asthma etc . .. we believe his immune

system is much like my RA . . . overactive. This would explain his " good

health. " We also have yeast issues but not extreme. Goldberg told us that we

have to regulate his immune system and get rid of the suspected HHV6 virus

that has leached onto his brain and is causing a disconnect. We are

cautiously optimistic. So far the Valtrex has indeed perked him up and

created a more focused child. However his autistic signs like hand flapping,

spinning, screeching etc . . . have not really subsided. We have to stay on

him constantly to redirect him to more appropriate behavior which of course

is exhausting. We can hardly wait to try the anifungal to see if it will

cause a burst in language which is currently like a 12 month old. (He is

almost 3 1/2)

I would love to hear others thoughts and particularly if there is another

child out there like our fella that has had success with the protocol. It

makes sense to us but it also helps to hear success stories.

Thanks,

Martha

Re: success

Thanks for your reply. It is very encouraging! I agree wholeheartedly

about the medical world; I never even bother asking our pediatrician

questions about anything autism because it's pointless. My son's

pediatrician, whom is a great guy, I believe was the last to know about my

son's diagnosis as he assured me he was fine all the way along. We have

started with a DAN doctor a few years ago and have seen some progress but I

am truly wondering if there is something more. My son is not sickly. He

does not get sick very often at all and when he does, he bounces right back

within a day. I'm more concerned with his immune system in general and

intestinal yeast. He has a little pot belly and always has. He has food

allergies and regular allergies and I just want to get him back on track.

Was your son sick all the time? How did you know you needed something

more for him in terms of ?

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

This is REALLY helpful information.  Thanks for sharing. You answered my

question and more.  The key for me was not knowing if Dr. G was more for

outwardly sick kiddos, but you made me see that just because they are not acting

sick in the traditional sense, they can still be sick.  My son does have

allergies and his throat has been red since he was younger, but his strep labs

always come back normal.  This is very interesting.  It's an interesting and

frustrating puzzle.

 

 My son's temperament is pretty great.  He is happy and funny however, he does

have perfectionistic meltdowns though.  I guess it's worth making an

appointment.  My son has been very hard to get services for in general

largely because of his demeanor, he isn't violent or doesn't outwardly tantrum,

but he does self-soothing behaviors instead and has sensory issues (along with

his developmental delays, speech, etc.)  that warrant services.  It's difficult

because people think that he is fine because he is pleasant.  I'm sure my

in-laws will think I'm crazy-- " he's fine " they always say, but boy they sure do

love all the progress Ian has made.  They give me credit for that but still in

the back of their minds I'm sure they think his speech would have come on it's

own without intervention.  I was not willing to take that chance. 

  

Thanks for the input!  You painted a good picture of what sickness looked like

in your child.  How old is Conner? 

 

dawn

 

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Connor is ten. Also very pleasant and fun when he is on track. One of his

biggest issues early on was audio sensory in nature. The Audiologists determined

he was hearing impaired and we put hearing aids on him. Pretty high

ampilfication in the upper frequencies. As soon as his school day ended they

would put him in a very loud crowded room to start after school and he would

meltdown. I could set my watch to their call at 2:12 to come get him because he

lashed out at some other kid. Now I realize a lot of his speech and cognative

delay was due to audio processing. I pulled the earing aids - the tantrum

disappeared - and the school decided to try a short period in mainstream reading

because he was decoding but they decided he was not show any comprehension.

-This class room required he read in unison with another child then answerer

verbal questions on Q - again reading comp based on audio processing and verbal

processing. I had them offer written

questions and answers - no problem. It is a long road but you can take one

brick off the pill at a time.

Bill

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Good for you for doing for your son when others think he is fine, we know when

they are not fine. We all know our children best and it is great that you

follow your mother instinct for your child- for his well being and future. No

one else will do it.

Angie

Dawn Dolan <dawndolan@...> wrote:

This is REALLY helpful information. Thanks for sharing. You answered

my question and more. The key for me was not knowing if Dr. G was more for

outwardly sick kiddos, but you made me see that just because they are not acting

sick in the traditional sense, they can still be sick. My son does have

allergies and his throat has been red since he was younger, but his strep labs

always come back normal. This is very interesting. It's an interesting and

frustrating puzzle.

My son's temperament is pretty great. He is happy and funny however, he does

have perfectionistic meltdowns though. I guess it's worth making an

appointment. My son has been very hard to get services for in general largely

because of his demeanor, he isn't violent or doesn't outwardly tantrum, but he

does self-soothing behaviors instead and has sensory issues (along with his

developmental delays, speech, etc.) that warrant services. It's difficult

because people think that he is fine because he is pleasant. I'm sure my

in-laws will think I'm crazy-- " he's fine " they always say, but boy they sure do

love all the progress Ian has made. They give me credit for that but still in

the back of their minds I'm sure they think his speech would have come on it's

own without intervention. I was not willing to take that chance.

Thanks for the input! You painted a good picture of what sickness looked like

in your child. How old is Conner?

dawn

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Hi Dawn -

Interestingly enough, CFIDS diagnostic criteria can include a chronically

sore/red throat (I think they also may refer to it as a 'cresent something' -

you may ask if that is how your son's throat is) as one of the common

complaints.

Re outwardly sick kids, one of the problems is that our kids don't necessarily

respond or present with illness in a 'typical' way.  Like, when my kids have

strep, they frequently would not complain of a sore throat, nor would they run

fever, but I could tell by their behavior changes that it WAS strep.  I got to

the point where I'd lie & say Sure they ran a fever, and when the strep came

back positive, I'd admit it, and say " but they DONT run fever w/strep, and no

one will listen. "   Then they'd want to say well maybe their a carrier, and I'd

remind them that carriers don't have negative strep tests at other times and

that a positive ASO titer rules that out.  

My boys must have had a chronic lowgrade viral infection - Dr G said my oldest's

was classic HHV6 - with no obvious signs of active infection but rather how his

immune panel looked ... despite being 'within normal ranges'.  My son's eye

contact changed one month (for the best after already being great) and we re-ran

the titers, which were finally positive for the first time.  My second son was

definitely viral but without markers, his titers never became positive, and he

has regressed into CFIDS twice now since being off antivirals - recovering the

first time last year after spiking a 106.9 fever but looking great.  Neither

child appears unhealthy in any way at the doctor's office.  It is the history

that is significant.

Then there are the kids that NEVER get sick.  Their immune systems are so revved

(possibly from a chronic lowgrade virus keeping it 'turned on', or simply being

chronically 'upregulated' without a known trigger, and this itself can be a

problem.  And antivirals and antifungals can help them as well.

In autism and other neuroimmune disorders like PANDAS, one or the other part of

the immune system - and sometimes both at the same time - can be chronically

upregulated, or down-regulated, without having primary immune deficiencies.

HTH

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

As Dr. G told us, many of our kids do feel sick most of the time, but since it's

all they've ever known, it seems " normal " to them. They've been sick for so

long, they don't know what it's like to feel well. We asked Noah one day after

he'd been on Valtrex for a few weeks, " How are you? " Usually he answers " fine, "

but the day we asked him, he had a huge grin on his face and he answered

enthusiastically, " I feel happy! " His eyes were bright and we could tell he

really did feel well and happy.

All the best,

Robyn

<thecoelemans4@...> wrote:

Hi Dawn -

Interestingly enough, CFIDS diagnostic criteria can include a chronically

sore/red throat (I think they also may refer to it as a 'cresent something' -

you may ask if that is how your son's throat is) as one of the common

complaints.

Re outwardly sick kids, one of the problems is that our kids don't necessarily

respond or present with illness in a 'typical' way. Like, when my kids have

strep, they frequently would not complain of a sore throat, nor would they run

fever, but I could tell by their behavior changes that it WAS strep. I got to

the point where I'd lie & say Sure they ran a fever, and when the strep came

back positive, I'd admit it, and say " but they DONT run fever w/strep, and no

one will listen. " Then they'd want to say well maybe their a carrier, and I'd

remind them that carriers don't have negative strep tests at other times and

that a positive ASO titer rules that out.

My boys must have had a chronic lowgrade viral infection - Dr G said my oldest's

was classic HHV6 - with no obvious signs of active infection but rather how his

immune panel looked ... despite being 'within normal ranges'. My son's eye

contact changed one month (for the best after already being great) and we re-ran

the titers, which were finally positive for the first time. My second son was

definitely viral but without markers, his titers never became positive, and he

has regressed into CFIDS twice now since being off antivirals - recovering the

first time last year after spiking a 106.9 fever but looking great. Neither

child appears unhealthy in any way at the doctor's office. It is the history

that is significant.

Then there are the kids that NEVER get sick. Their immune systems are so revved

(possibly from a chronic lowgrade virus keeping it 'turned on', or simply being

chronically 'upregulated' without a known trigger, and this itself can be a

problem. And antivirals and antifungals can help them as well.

In autism and other neuroimmune disorders like PANDAS, one or the other part of

the immune system - and sometimes both at the same time - can be chronically

upregulated, or down-regulated, without having primary immune deficiencies.

HTH

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

Robyn

Great comment ,I now nick named Connor bright eyes. He loves it and truly

understands. Te eye contact and facial expessions are more informative than the

language at first.

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

" Bright eyes! " I love that. One of the best things that Dr. G told us to do was

to explain to Noah every night before bed that we are all working really hard to

make him feel better and how proud we are of his accomplishments. He also says

this to both of our kids at every appointment. He truly cares about our kids and

their struggles. After being the object of several physicians' dismissive

attitudes toward our children and our concerns, this is one of bets things about

Dr. G.

All the best,

Robyn

Bill klimas <klimas_bill@...> wrote:

Robyn

Great comment ,I now nick named Connor bright eyes. He loves it and truly

understands. Te eye contact and facial expessions are more informative than the

language at first.

success

> groups (DOT) com

> Date: Saturday, June 21, 2008, 5:21 AM

> How can I get an indication of treatment success for

> autistic

> childrens

> Ami

[Guest guest]

OUr son was a responder to valtrex and nizoral - it was great until

we stoped it bc we did not have decent medical care...the autisitc

signs you mention went away with diet changes for us and have not

come back even when he was no longer on the meds - the spaciness and

being sick-ish came back off meds. We put Matt on SCD legal only

foods minus fruit and honey and used the book FIber Menace - esing

the transition strategies to make sure constipation and IBS type

stuff was not the result of switching to this type of diet - he was

really constipated until we found the FIber Menace research...Mtat

still toe walks though..but no more running in circles, obsessively

opening and closing doors, and OCD and stimming WAY down...apparently

related to gut and bowels stuff and not just the inflammation in his

brain or his neuro immune dysfunction. Matt only uses the hydro c

and only if he does not stool for 2 or three days...as it takes that

long for the body to form stools when on a low sensity, gut healing

sort of diet..hope this helps - his site and his book were very

helpful to us. Matt had a bad clostrida overgrowth despite not

presenting with typical characteristics...treated with flagyl after

labs confirmed it - even Dr.G was surprised he had it...The Fiber

Menace stuff on disbacteriosis helped us deduce what was going

on ...and we saw language gains after treating it....despite reading

the book it took me a long time to pull the granny smith apples,

peeled and cored, that we were feeding Matt....finally we did - more

gains and the bely distension went way down - there is so much Matt

cannot digest yet...and we learned that even if our kids look

healthy, if stools are too large, and patterns are not normalized for

bms...it can create hand flapping and other behaviors as they try to

withhold and keep from going...best of luck. Di

>

> > From: zagaedu <emilioczahav (DOT) net.il>

> > Subject: success

> > groups (DOT) com

> > Date: Saturday, June 21, 2008, 5:21 AM

> > How can I get an indication of treatment success for

> > autistic

> > childrens

> > Ami

>

>

[Guest guest]

Red throat...I wonder if acid reflux could be the cause...the site

and book Fiber Menace was a great help to us wiht all Matt's

undiagnosed but really problematic gut stuff...I wold check it out

and see if all the behaviors you are seeing are in large part to poor

bowel health and some fiber damage. In Matt's case he was a little

red faced strainer as a baby anmd we were told this is normal - NO,

its not an d it creates food issues and allergies bc of injuries that

left unaddressed bceome mistaken for personality...really just

constipation or cramping or with holding of stools that hurt to

pass...I know it sounds crazy, but for us it was all a big deal. I

have pics of baby Matt slathered with yogurt and wmiling...yogurt

that it turns out was FULL of indigestible fiber additives like agar

or pectin ( wich can interfere wtih the villi of the small intestine)

and more...and we shop at Whole Foods or Trader Joes! Fiber can

seriously mess up the body's ability to absorp nutirtion, disrupt the

gut flora and that in turn leads to a disruption in the guts own

ability to PRODUCE b and k vitamins...this book helped us sort

through what was brain stuff and what was malnutrition and

malabsorption stuff....it may be a big part of your

son's " personality " stuff too...just like those high functioning kids

for whom the GFCF is a GOdsend - bc it simply removes the hradest to

digest things - and they really had impaired digestion, not autism,

in fact...Di

>

> > From: zagaedu <emilioczahav (DOT) net.il>

> > Subject: success

> > groups (DOT) com

> > Date: Saturday, June 21, 2008, 5:21 AM

> > How can I get an indication of treatment success for

> > autistic

> > childrens

> > Ami

>

>